研究动态
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利用复杂的护理网络:在资源有限的环境中进行姑息治疗的患者和家庭的民族志。

Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

发表日期:2024 Oct 10
作者: Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols
来源: PALLIATIVE MEDICINE

摘要:

非传染性疾病负担的增加和人口老龄化导致各种环境下姑息治疗的需求增加。然而,在印度尼西亚等资源有限的地区,特别是在农村地区,缺乏专业的姑息治疗。人们对具体的姑息治疗导航知之甚少,因为之前的研究主要集中在癌症护理导航上。因地制宜的方法至关重要。探索患者和家庭如何应对姑息治疗以及他们遇到的问题。一项使用深入访谈和观察的人种学研究,并使用反思性主题分析进行分析。对 49 名参与者(患者、家庭护理人员和卫生专业人员)和印度尼西亚巴纽马斯的 12 个患者家庭单位观察。患者和家庭通过不同的策略进行姑息治疗:(1)自助,(2)利用补充和替代医学,(3)避免讨论心理问题,(4) )动员富有同情心和倡导性的社区,以及(5)通过宗教实践寻求精神护理。尽管在姑息治疗方面资源有限,但我们的参与者使用了复杂的护理网络。一些问题的根源在于医疗保健系统的障碍和公众缺乏姑息治疗意识。通过利用现有项目并让社区卫生志愿者参与,当地初级卫生中心可以成为潜在的姑息治疗领导者。在社区内培养共同的理念可以加强护理合作和支持。
The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.To explore how patients and families navigate palliative care and the problems they experience.An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.